Background
No data exist about caregivers’ beliefs surrounding a diagnosis of cerebral palsy (CP), its causes and how this influences caregivers’ perceptions of therapy in poorly-resourced South African settings. Neither is there any information about how rehabilitation therapy influences the life of the child or the caregiver. The appropriateness, the outcomes and the effectiveness of therapy for children with CP in a South African setting have not been studied. Numerous tools and scales for measuring outcomes of rehabilitation relating to both the child and the caregiver are available internationally but none have been validated for use in South Africa. Caregiver-related outcomes were the focus of this study and included maternal well-being and mental health, personal quality of life, availability of support and interaction with the child. These are factors known to
potentially be influenced through contact with rehabilitation services.
Aims
The aims of this study were firstly to ascertain whether caregiver-related outcome measures developed in high-income settings were appropriate for a poorly-resourced South African setting; and secondly, to describe parental perceptions and experiences of rehabilitation therapy received in public service hospitals in disadvantaged areas.
Methodology
The study was undertaken in two phases.
Phase One was a quantitative cross-sectional, analytical study and addressed the first aim. Five scales were identified from the literature as being suitable for measuring the caregiver-related outcomes of interest in this study: the Caregiver-Child Scale, the Family Support Scale, the Personal Quality of Life Scale, the Mental Health Subscale of the Medical Outcomes Study (MOS) Short-form 20 Health Survey, and the Measure of Processes of Care (MPOC) Scale. The first four scales measure aspects of maternal well-being and interaction with the child whilst the MPOC assesses caregivers’ reported experiences of family-centred behaviours of rehabilitation service providers.
These scales were modified and adapted to make them relevant to a South African setting through a process that included focus groups with caregivers and experienced therapists. After the modified scales had been translated into six local languages and then back-translated into English, the translators, researcher and interviewers met to discuss discrepancies between the two versions (the original modified English version and the back-translation) and to reach consensus on the final translation.
The scales were further refined during a pilot study where two trained interviewers administered the modified scales to 24 caregivers of children attending public service hospitals for therapy. Items in the scales which were confusing for caregivers or which they found difficult to understand were clarified. In addition, where necessary, concrete examples were given of the type of behaviour or action being asked about in the scale.
Following the pilot study, two trained interviewers administered the modified scales to a convenience sample of caregivers attending rehabilitation therapy in public service hospitals in Gauteng and Limpopo. The reliability and validity of each scale was assessed using multi-trait scaling and factor analysis.
Phase Two employed qualitative methodology to address the second aim of the study. A purposive sample of 24 information-rich caregivers attending therapy in public service hospitals in Gauteng and Limpopo participated in one of five focus groups. The discussions were conducted in local languages. Taped recordings were transcribed and translated into English before being analysed using a grounded theory approach.
Results
Two hundred and sixty three caregivers from 31 hospitals in Gauteng and Limpopo provinces were interviewed during the first phase of the study. The mean age of their children was 3.3 years (± 2.6).Two-thirds of the children (66%) had severe limitations in motor function and few (15%) could communicate verbally.
Only one of the five scales, the Mental Health Subscale, proved to be both reliable and valid in South African settings. A second scale - the MPOC - was potentially useful if reduced to an eight item scale (from the original 20 items). The Family Support Scale was reliable but not valid whilst the Caregiver-Child and Personal Quality of Life Scales were neither reliable nor valid.
The process of administering the scales combined with the qualitative data helped to explain why the scales did not perform as well as expected in a South African setting. Reasons for these findings included the caregivers’ inexperience in completing these kinds of questionnaires; their difficulty with the concept of grading their responses which meant that Likert-type scales were difficult for them to complete; and thirdly language and cross-cultural applicability. This was because the scales were developed for very different cultural groups. It was not the questions or scale items that were the problem; it was rather finding the language and words that caregivers themselves would use to express the underlying concepts.
The study found that caregivers living in disadvantaged South African settings live very differently from their counterparts in well-resourced areas. They lived in poverty; were beset by financial concerns; often abandoned and rejected by their partners; and endured gossip and ignorant attitudes from their neighbours and the community. The burden of daily care-giving was high as most of the children were severely disabled. This was compounded by concern about the child’s health and the future. Despite this, the study found that they were happy, healthy and generally well satisfied with their lives. Support from informal support structures such as relatives and close family members, together with formal support structures, was an important dimension in helping caregivers cope.
Qualitative data from the focus groups yielded information regarding caregivers’ beliefs surrounding the perceived cause of the child’s disability. These ranged from traditional and cultural beliefs to medical explanations, and to frank confusion between the two. This was accompanied by misconceptions about therapy and the outcome thereof.
Parental perceptions and experiences of rehabilitation were positive although many caregivers initially expected therapy to provide a cure. Respectful and caring attitudes, “hands on” therapy, practical help and assistance with assistive devices and school placements were aspects of service most valued by caregivers.
The study helped define the components of an “ideal” therapy service in disadvantaged South African settings. They would include the availability of parent support groups; greater involvement of fathers, close family members and traditional healers in the rehabilitation process as well as the implementation of innovative strategies to ensure clearer communication and understanding between therapists and caregivers operating in a cross-cultural setting. Elements of care not traditionally perceived as part of therapy such as promoting supportive networks and taking on advocacy role for children with disabilities may offer additional advantages.
Conclusion
The study confirms the view that scales developed in high-income settings are not necessarily immediately applicable to less well-resourced settings and often require extensive modifications to ensure reliability and validity. Whilst the Mental Health Scale is a reliable and valid tool for caregivers attending public service hospitals in South Africa, other scales, such as the MPOC, a popular scale in North American and Europe, require substantial modification for a South African setting.
In addition to highlighting the challenges involved in finding suitable outcome measures of therapy intervention for this population, this study has objectively documented the lives and experiences of caregivers of children with CP in South Africa for the first time together with their experiences and perceptions of rehabilitation therapy. Using this information, the components of an “ideal” rehabilitation service in a disadvantaged South African setting have been identified and described. This may facilitate the establishment of a more effective and appropriate therapy service for caregivers and children with CP living in poor areas.

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Cerebral Palsy

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rehabilitation

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caregivers

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poorly-resourced areas

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Parental perceptions and experience of rehabilitation services for children with cerebral palsy in poorly-resourced areas